Another way of treating Parkinson’s

....with lessons for the wider NHS

Any one of the 145,000 people with Parkinson’s in the UK will tell you the routine. You turn up at your GP surgery suspecting something may be wrong, you get an appointment to see a neurologist who delivers the diagnosis some months later , and from then on you get to see the specialist perhaps once a year. Your neurologist, like mine, may be an excellent and sympathetic doctor but they are hard pressed. The result is that for much of the time you feel that you are battling the disease on your own.

But in the South West of England they are trying out a new model for Parkinson’s care, one offering a more flexible approach. It involves giving patients a wider range of healthcare professionals to contact about their condition, starting with an assistant practitioner and going right up to the consultant. It actually results in even fewer face to face appointments with the neurologist but a much greater level of interaction between the health service and patients, who are asked to fill out regular questionnaires about their state of health and periodically given a smartwatch which records their symptoms. The key is that, for the most part, patients are able to manage their condition from home without needing to visit a hospital.

The Parkinson’s Home Based Care project was conceived and is run by the Plymouth-based neurologist Professor Camille Carroll and it was born out of her frustration at the. service she was giving patients. “What drove this was my waiting list in Cornwall,” she explains. “I would optimistically say to everybody, I'll see you again in a year and that turned into two years. And that was just insane.”

Now her patients can still request an appointment with her if they feel their concerns cannot be dealt with by others in the team - and they won’t need to wait for years: “Because I have the flexibility that I have in the way I've set up the service, I can generally fit people in within 10 working days. On the whole, that's a video or telephone appointment. It's very rare that I need to actually physically see someone.”

Data from the PKG watch , worn for about a week, plays an important role as a safety net, alerting doctors and nurses if someone has worsening symptoms but has not been in touch. “I didn't think we could rely on a safe service just on patient initiated contact without putting some safety netting in place,” says Professor Carroll.

“For Parkinson's, the changes are so insidious, and of course, lots of them result in something that might be a barrier to seeking contact, whether it's cognitive impairment or low mood or apathy.”

But the programme faces a serious challenge - it is proving expensive to run and there are big delays in processing the data from the PKG watches. A big part of the problem is that this is not a digital service - patients fill in questionnaires on paper and put them in the post. “We've demonstrated it isn't scalable. So it's not going to revolutionise Parkinson's care in the way that it might if it were a little bit slicker.”

Now, however, the team is getting funding from NHS X to digitise the Parkinson’s Home Based Care programme, with an online portal for patients either as a web page or as an app on their phone. There will of course need to be safeguards for people who are not able to use the internet but creating a digital service would mean it could be scaled up to cover far more patients. The hope is that the lessons learned in Devon and Cornwall can be applied elsewhere in the NHS.

At a time when hospitals are being told they need to cut outpatient visits by as much as a third over the next few years, this kind of project will be examined with interest by lots of NHS managers. And for me, this is a case where the interests of patients and managers are aligned - I would far rather manage my Parkinson’s from home using the latest technology rather than spend half a day travelling to the hospital once a year.

*Full disclosure - I have been talking to the Parkinson’s Home Based Care team about getting involved in some kind of patient advisory role.